Learning in the Exam Room

I’ve written previously about moments in the exam room where doctors have taught me to speak up, to have self-confidence, and not to avoid the difficult.

I haven’t written much about what doctors have learned from me. Occasionally, there’s something really small: do you think you could keep a box of tissues in this office? But one moment stands out to me in particular.

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We are on the phone, Dr. Leo & I. We are trying to sort out things related to graduate school and medical treatment. I am frustrated. Very frustrated. Too many things to do. Too little energy to do them. Overwhelmed. Needing help.

Dr. Leo is very patient. He listens. He pauses. Then he says what everyone says, You need to budget your time. Try to find a balance. Don’t try to do everything at once. In fact, only even try to do a limited number of things.

Naturally, since I’ve heard that at least a million times, I try to smile and nod (which he can’t see over the phone) but I am still frustrated. That comment doesn’t change anything.

At some point, he offers to help me schedule out the remaining requirements for my degree over time. So he asks me to send him a list of requirements (and maybe even some initial sketch over time.) Of course. Not a problem. I would love to have help with this.

Dr. Leo: Can you get it to me over the weekend? Then I can look at it before you meet with Dr. Samuel mid-week next week. Then you can bring our plan to him.

Me: [long pause] Ummm, how about I put it on the short list of things that I would like to accomplish this weekend?

[more long pauses]

Me: I would like to do that this weekend, and I agree that it makes sense. But I can’t make any promises. My illness and my symptoms are just too unpredictable.

[long pause]

Dr. Leo: Oh. Ok.

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It was a light bulb moment for him. That is literally what life is like for me when I take his advice. It’s frustrating because it can mean that nothing gets done even though three days go by. If the only thing that you can do when you get out of bed is to change into a new set of pajamas and get back into bed, no matter of budgeting and being realistic can mask the fact that the dirty laundry is piling up. As are all the other things that you wanted to do.

It was an interesting exchange for me. I wasn’t trying to make this a “teachable moment”. I wasn’t trying to override his authority. I was just frustrated and being honest because I was tired of fighting.

But it became a light bulb moment. A moment for Dr. Leo to step into my shoes. A moment for him to step into my professors’ shoes and understand why having me as a student can be so frustrating. A moment for him to step back into his own shoes and reconsider how to be the best doctor, the best advocate, the best friend.

For me? It was a moment of peace. Of validation. Of friendship. Because someone took the time and made the effort to understand.

Abigail Cashelle

My Heart is Overflowing…

This has been one of the most difficult semesters of my life. I’ve been told that I could have all sorts of different medical problems. I all but dropped out of graduate school. My uncle unexpectedly passed away. I’ve been so sick that I got sent home from class and had entire weekends where I didn’t get out of bed.

At the same time, I’m blown away by all the truly good things that have happened. I don’t mean “good” as in this is a good apple pie. I don’t even mean “great” like Frosted Flakes are grrrrrreat. I mean “good” in the purest, rawest sense. There’s just no other way of interpreting these things. And so, my heart is overflowing with thankfulness for the following (in no particular order):
– a caring, loving, godly roommate in Gretchen
– Alana who faithfully calls, texts, messages, prays no matter what
– the folks at morning & evening prayers who prayed for me & for my uncle Eddie
– Aaron who always made time for me and prayed for me, especially when Timothy & Grace moved away
– Timothy & Grace in their love and their prayer, especially for their moving back
– Diana for all the fun conversations and the meals
– Dr. Leo for making time for me in between everything else that he does & for being open to listening and learning with me on my crazy journey & for advocating on my behalf when I’d given up on advocating for myself
– those anonymous classmates who took it upon themselves to help me out when I had a bad day and the professor was picking on me or brain fog robbed me of my thought or chronic fatigue meant I was late to class again
– Lydia for being a sounding board for my ideas and a person to listen to all my frustrations
– Bryan for answering the phone and listening even though he didn’t have any answers and couldn’t help me
– Larissa & Ian for continuing to be an inspiration and an encouragement in their testimony
– Dr. Mark who took the time to help me sift through my medical chart, trying to draw connections, who walked me through several difficult medical moments, and who assured me that I didn’t have to panic when I felt vulnerable or scared
– Isaac & Elora who just moved here and want to be friends
– all the people and all the moments that taught that I am strong and I have good instincts; and, for all the other moments and the people that assured me that sometimes I was allowed to grieve and feel inadequate because I wasn’t doing this alone

Abigail

Chiropractic Care

Alternative medicine. I’ve never been a big fan. I think part of it has to do with the fact that my parents are big proponents of it, and it became an issue we split over. Part of it has to do with the fact that it’s not quite as regulated and so every practitioner does something a little different. Part of me is honestly fearful of participating in black magic and becoming cursed.

I’ve tried a lot of different kinds of alternative medicine. I have had a few small miracles. I have met some very interesting people. But once I took my medical care into my own hands, I only retained one alternative practitioner. This is the story that explains why.

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I’ve been a patient of a chiropractor since May 2009. I was not a believer in chiropractic medicine. I went for another reason entirely. That chiropractor was one of the first people who really listened to me, heard my fears, asked me tough questions, told me about hard things in her own past, and celebrated with me as I made forward progress. I kept going to see her because she was a practitioner that cared about me. The chiropractic adjustments helped with some of the pain, but mostly I went because her office was a safe place. It was a place for Abigail to be Abigail. No strings attached. No facade needed.

Fast forward more than two years later and I was in a new state, starting a new graduate program. As I tried to make sense of everything, I knew that chiropractic care could at least give me some temporary relief from my pain. (Why did it take me months to transfer my medical care here? I don’t know. It also took me months to find the post office. And that’s not even deliberately hidden.)

That’s when I started seeing Dr. Harold. He looks nothing like Harold from Harold and the Purple Crayon; it would be awesome if he did. But he’s definitely very creative even if he has only one primary treatment — the purple crayon.

Chiropractic adjustments and manipulations have helped me a lot. With Ehler’s-Danlos syndrome, it’s easy for things to slip into weird positions. Therefore, my muscles get really tense in order to keep things in their proper place. That can lead to pain. Chiropractors can help with that. Plus, fibromyalgia means that your nerves have amazing memory, i.e. you feel pain much longer than other people do. So chiropractors can help with that if they don’t overdo things and make them worse!

I’d be the first to admit that I’ve been skeptical of chiropractic medicine for a long time. I’m still not 100% sure how to explain it to people. But I do know that part of my illness is related to the muscoskeletal system and/or connective tissue. In the mess known as absence-of-a-real-diagnosis-or-treatment, it’s nice to have something that can at least help temporarily and help prevent things from getting even worse. Even more, I see Dr. Harold pretty frequently — anywhere from 2-4 times a month. So he has a pretty good idea of where I stand emotionally and physically even if he can’t do anything about it himself.

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As a chronic patient, I highly recommend having a team of medical practitioners. Every specialty has different things to offer you as the patient, but different practitioners also pay attention to different things. Dr. Harold can tell you when he comes into the exam room and finds Abigail napping on his exam table. (Yes, it’s happened multiple times.) He can also tell you when I’m really excited about something like a visit to see Tabitha or a presentation I’m giving later that week. Plus, he can wax poetical (or maybe draw with his purple crayon?) how my body internalizes stress and finds bizarre ways to lopsidedly absorb it. Those are things that Dr. Leo (for example) doesn’t have the resources to note in my medical record. Most of my conversations with Dr. Leo are over the phone or via email. I see him once every 3-4 months!! As a patient of both doctors, I have a wider range of treatments and perspectives. Plus, once they communicate and share information, they have better insight into my case, insight that I don’t even have.

Alternative medicine can be a huge drain on limited finances and lead to disappointed hopes. But alternative medicine can also offer a new perspective on disease. I’ve become open to forms of alternative medicine that help you as a patient develop self-confidence and empower you to become a better advocate for yourself. If it can give you even temporary relief of one form or another, all the better. Even if it’s all a figment of Harold’s purple crayon, if it makes you feel better about yourself and makes your body happier, then does it really matter how you reached that state? Isn’t that the desired outcome?

Just some thoughts,
Abigail

For the Caretaker

From The Book of Common Prayer:

Almighty God, who didst inspire thy servant Luke the physician to set forth in the Gospel the love and healing power of thy Son: Graciously continue in thy Church the like love and power to heal, to the praise and glory of thy Name; through the same thy Son Jesus Christ our Lord, who liveth and reigneth with thee, in the unity of thy Holy Spirit, one God, now and for ever. Amen.

Sanctify, O Lord, those whom you have called to the study and practice of the arts of healing, and to the prevention of disease and pain. Strengthen them by your life-giving Spirit, that by their ministries the health of the community may be promoted and your creation glorified; through Jesus Christ our Lord. Amen.

Taking Time for Myself

I find it very easy to get caught up with lots of things. Even if I spend half the day in bed, it seems that my mind is completely occupied. After all, I’m a full-time student. A full-time patient. A daughter. A friend. A teacher. A roommate. A hostess. The list could go on forever.

My to-do list can be overwhelming even to the ordinary person. Then, when you take into account that sometimes I only have the energy to get out of bed, change into a different set of pajamas, and then get back into bed, it can be a true farce.

Over the years, I’ve learned that a key to keeping my own sanity is to take time for myself. If I actually schedule me-time, I’m actually healthier, happier, and more productive.

Sometimes I craft. Sometimes I play music. Sometimes I pray. Sometimes I reflect. It’s not the activity so much as putting myself on the list of people and things that are important in life.

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These prayers found in The Book of Common Prayer have been helpful for some of those quiet times, especially when I don’t know how to pray or what to say any more.

O God, the source of all health: So fill my heart with faith in Your love, that with calm expectancy I may make room for Your power to possess me, and gracefully accept Your healing; through Jesus Christ our Lord. Amen.

Lord Jesus Christ, by Your patience in suffering You hallowed earthly pain and gave us the example of obedience to Your Father’s will: Be near me in my time of weakness and pain; sustain me by Your grace, that my strength and courage may not fail; heal me according to Your will; and help me always to believe that what happens to me here is of little account if You hold me in eternal life, my Lord and my God. Amen.

O Father of mercies and God of all comfort, our only help in time of need: We humbly beseech Thee to behold, visit, and relieve Thy sick servant — for whom our prayers are desired. Look upon him with the eyes of Thy mercy; comfort him with a sense of Thy goodness; preserve him from the temptations of the enemy; and give him patience under his affliction. In Thy good time, restore him to health, and enable him to lead the residue of his life in Thy fear, and to Thy glory; and grant that finally he may dwell with Thee in life everlasting; through Jesus Christ our Lord. Amen.

Abigail Cashelle

The Velveteen Rabbit

Thinking about Milton, I’m reminded again of this children’s book The Velveteen Rabbit by Margery Williams first published in 1922.

I’m not sure how young I was when I was introduced to this story. I don’t think I could read yet. I don’t even know who introduced me to this book since it’s not the type of book my parents would typically read to their children.

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The Velveteen Rabbit. I remember that a little boy is given a velveteen rabbit as a gift. I think the velveteen is some type of material, but my little girl mind doesn’t really care. I just like the idea of a stuffed rabbit as a gift.

So the boy receives this gift among many other gifts and singles it out as the most important. (Thumbs up! I like this boy already.) He brings his rabbit with him everywhere and integrates him into all his daily activities. (Extra thumbs up.) He even wishes the rabbit was real and could talk to him.

Then the little boy gets sick. Something terrible. Contagious. They think he might die. Somehow, the boy recovers. But they (the big, bad adults) take away all his toys, even his rabbit. The toys are contagious. (I thought they weren’t real.) They burn everything. The boy is devastated. His best friend is gone. (Duh.) They (the big, bad adults who have gotten bigger and badder) tell him to get over it. Then, they rudely execute a curtain call and the story ends.

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At least that was my impression of the story. If it’s possible for a young child to be indignant, I was. I didn’t understand how something so good (the rabbit) could become so bad. In fact, I’m pretty sure I was convinced that the rabbit saved the little boy’s life. Burning the toys? Was that really necessary? Why did it need to be irrevocable? Were they punishing the boy for getting sick? Punishing the rabbit for getting him sick? I think I went and held my stuffed animals a little tighter. No one was going to take them away from me. I would build a brick house around them first.

Frankly, I’m surprised that I remember this story at all. And it’s impressive how much it relates to my own life. The questions I had as a child have come back to haunt me, particularly as adults try to make sense of a very confusing situation known as a chronic illness. Are you sure you’re not acting out to get attention? Why are you seeing another doctor? Why haven’t you taken this medication? Why have you missed school again? I’m taking away this thing because it’s “bad” for you….

Reflecting on this story, I see a couple of life lessons:

1) Different people are attached to different things. And in moments of vulnerability, we cling to them.

2) Illness is not fair. Nothing about it is fair. There are things that you can do to be a responsible human being, but at the end of the day, you’re not in control.

3) Being vulnerable and not being in control is hard. It’s hard to comprehend as the subject. It’s even harder to understand when it’s happening to someone else.

4) Grief takes many different forms. People grieve over different things because they are attached to different things. They grieve in different ways. That grief should not be brushed to the side.

5) Sometimes we need friends on our level. Friends that pay attention to us and not to our illness (or achievements or skin color or…) We need someone to just be there for us.

6) My memory of storytime is pretty shaky. Read the book. Note the difference in the storyline.

A blast from the past (my past and the real past),

Abigail

hmmmmmm, CBT

There have been a lot of debates about CBT. Numerous of my blog friends have written about CBT. Sophie and I have come to the same conclusion. We have a lot of experience with pain management. What we need is the cause of the pain to be addressed. Like her, I’ve also been discharged from the care of a CBT practitioner. I’m sure there’s something that I could learn from her. But it’s not worth the time.

Cognitive behavioral therapy (aka CBT) is a great thing… for some people. In essence, it helps people who have bad habits form better habits by helping them conceptualize things in their life differently and then act based on the new premise. The problem for those of us with CFS/ME is that for us to have gotten this far probably means that we’ve already figured a lot of this out for ourselves. Plus, it doesn’t get at the root problem. Our pain is not caused by bad habits; it’s not self-inflicted, not even at the level of the subconscious. So at the end of the day, you can adapt to living with a broken arm all you want, but it’s still going to be broken.

Here’s a great way to look at CBT and CFS/ME:

this is probably worse than putting a penguin in an elephant gown

Just some thoughts from my experience,
Abigail

Disclaimer: I am not a medical professional. Please seek attention from a licensed professional before you make a choice regarding treatment.

Music: Another Part of My Journey

Music has been an integral part of my life for as long as I can remember. I started taking piano lessons when I was six after having picked out the upright piano I wanted in the piano store. (It turns out that I picked a good one.) While I’ll be the first to admit that I never had the talent to perform professionally, I enjoyed playing the piano and performed quite complicated pieces rather well in high school. In ninth grade, I gave a joint recital with my younger sister, performing a number of pieces including Mozart’s Twelve Variations on “Ah vous dirai-je, Maman” known in plain English as Twelve Variations on “Twinkle, Twinkle, Little Star”.

My fondest memories of childhood music were chamber music. In tenth and eleventh grades, I had the honor of working with a local violinist who was just about my age. Together we performed Beethoven’s Spring Sonata for Piano and Violin. It was so much fun to work with another instrumentalist and to see music come and alive in dialogue between instruments. I fell in love with the different textures, and the power of music to convey dynamic emotions. I knew I was lucky to have the opportunity to play with this talented friend, and I learned a lot by watching her perform.

All through high school I dreamed of becoming one of those professionals who performs as a musician on the side. I talked to friends about playing at weddings and fell in love with chamber music. I got involved in church as a pianist, working in children’s ministry. I started volunteering as an accompanist for a local violin studio.

Then, last year of high school, illness struck. It was subtle at first, but the first thing to go was piano practice. No more three hour a day practices. No more one hour in the morning, one hour in the afternoon practices. At one point, it was down to fifteen minutes once a day (if I was willing to put up with a lot of pain.) How I made it through that last year of instruction, I really don’t know. I remember pacing backstage at the end of year recital; I knew I wasn’t prepared and all I wanted to do was be finished.

I tried really hard to continue to be involved in classical music in college, but it was too hard. The two music history classes I took tore my heart apart. I got to the point where I stopped listening to CDs of pianists, and I cried every time I went to a piano recital. Orchestra concerts were hard (and one of my two sisters was in orchestra every one of those years.) Even playing at home on my piano to myself was hard. It was just easier to run in the opposite direction. As days turned into weeks, weeks into months, and months into years, I just kept running away from the music I had grown to love, unwilling to face the loss of something I loved.

It took about five years before I was ready to face the issue. I got back in touch with my best friend the musician who’s now touring the international stage. I reached out to the violin teacher I worked with in high school, and Alana and I are really close now. I live vicariously through her adventures of playing wedding gigs. I’m starting to find new ways to integrate music back into my life. For a while, I took violin lessons via Skype with Alana. I start playing for church services again. And, I’ve gone to a few concerts here and there.

Music? It’s an amazing part of my journey. It brings joy in ways nothing else can. It also brings sorrow. While time may not change it, I hope that time will mellow the harmony and that as the song progresses, the tide will turn. It feels like it already.

Abigail

LOL: XXXXL Exam Room

I’ve written about the XXXXL exam room before. It really is that big. And I really do get assigned to it very frequently. You see, Dr. Mark has three exam rooms. I’m fairly certain that I’ve been assigned to all three exam rooms before. The other two exam rooms are normal size. They have normal size chairs and normal size gowns. They even have windows (with shades, of course). But, more often than not, it’s the XXXXL exam room I get directed to, especially if it’s an exam that involves wearing a hospital gown (paper or cloth?) Because that’s the most logical place to put the XXS patient, right?

see how different XXS is from XXXXL??

Anyhow, the last time I saw Dr. Mark, the cheerful nurse directed me to the XXXXL exam room. Guess what? She handed me the cloth gown for an elephant!! Put this on and sit on the exam table and the doctor will be in shortly.

I’m not sure what the technical definition of “shortly” is or whether there’s a separate medical definition for it. I’m pretty sure though that if the light to the exam room shuts off because it’s convinced that there’s no one in the room that the time elapsed exceeded the definition of “shortly”. At least it does in my dictionary.

Enter a problem. The room is dark. The XXXXL exam room has no windows (of course). So there’s not even a smidgen of light. The exam table is pretty high off the ground, and I’m wearing the elephant gown. That means that if I try to move and I’m not careful, I could trip over my elephant gown & wind up on the floor. That would not be good. And, of course, the room is SO large that the motion detector only detects the motion in part of the room, the part of the room that doesn’t include the exam table (of course).

Imagine the exam table completely outside the boundaries of this image. That’s how big this exam room is.

I don’t remember what I did. Somehow I managed to get the lights to turn back on without falling on the ground in a heap and twisting my ankle. I think I figured out how to get down from the exam table and wave my arms at the motion detector so that the lights came back on.

The whole thing was just ridiculous. That room. That exam gown. And now, the lights.

Naturally when Dr. Mark came in at t > “shortly”, he couldn’t understand what was so funny. But I think it’s better if we just keep that between you and me. After all, who wants to tell the doctor that they almost got swallowed whole by his exam room??

Abigail

Holiday Shopping

Given how much I write about the people in my life, it ought to be clear that I’m extremely grateful for the many ways in which friends have helped me on this journey. As I look forward to the American holiday of Thanksgiving, my heart overflows with Thanksgiving toward those people who have taken the time to be there for me and to listen to me as I struggle to navigate the complex world of young adulthood, chronic illness, and graduate school. In the spirit of thankfulness and in acknowledgement of the energy required for caregiving, I’ve compiled a treasury of my own ideas of gifts to care for the caretaker, small ways to say “Thank you for caring” and “Thank you for welcoming me into your life even if you can’t imagine how to relate or what to do.”

I also have many friends who want to help and don’t know how. I don’t need a superman or a magician. I need friends who walk with me on this journey, who take time to learn about my struggles, who are open to my whole life, not just what’s comfortable. Here are some things for them.

A few other things come to mind:
– Shannon at Meadow Muffin Gardens also has a post on National Caregivers Month
– Hugh Marriott has written a highly entertaining book called The Selfish Pig’s Guide to Caring which details his own journey of learning to care for his chronically ill wife

Just a few thoughts,
Abigail